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By Hannah Giunta

While euthanasia has been legal in Belgium since 2002, the government recently began considering changes to existing laws that would guarantee a legal right to die for minors as young as 12 (Blake 2012). This policy change has generated a great deal of controversy, particularly in light of several troubling cases that have recently been made public. No matter what their personal beliefs about euthanasia, bioethicists, health care professionals, those involved in public policy, activists, and all citizens with any vested interest need to carefully examine the ethical implications of various policy changes by asking themselves reflective, critical questions. So, in this blog post, I hope to get readers thinking about the issue by posing four such critical questions that I believe we should consider when analyzing the right to euthanasia for minors.

Question 1: Are minors developmentally capable of making decisions about euthanasia?

There is a general consensus that medical decisions should only be made by competent patients who have the ability to understand the implications of their actions. While scientists once believed that the teenage brain was nearly fully developed, recent evidence suggests that the frontal lobes, the areas of the brain responsible for critical thinking and predicting consequences, are still not connected in the adolescent brain (Knox 2010). The fact that teenagers’ brains are not fully developed may make it difficult for them to accurately understand what life with a significant medical condition entails. They may also have difficulty realizing the gravity and finality of choosing to die. Although no one wants to deny a teenager’s lived experience with her disease, it would be just as unfair to ask her to make decisions she cannot reasonably be expected to make. Thus, we need more information about how teenagers actually make these types of decisions when thinking about the ethics of euthanasia in this population.

Question 2: What effect will this have on families?

Though they are preparing for independent life, teenagers are still integral members of the family unit. Any policy that affects one member of the family unit affects the entire unit. Allowing minors to choose euthanasia fundamentally changes the relationship they have with their parents and the relationship parents have with medical providers. If minors can choose to die when confronted with a serious illness, questions arise about what other decisions they should be allowed to make independently, and these questions force everyone to consider what role the family should play in these minors’ lives. Will families be pressured to choose euthanasia if their child requests it in order to avoid a legal battle? Will parents and other family members still have opportunities to say goodbye to their child in meaningful ways? The medical establishment is inordinately powerful, and it is important to consider how shifting end-of-life decision-making away from families will impact their ability to participate in their children’s care.

Question 3: How will the law be implemented?

Belgium’s euthanasia laws are designed with safeguards to insure only patients who are intractably ill can choose death. Patients requesting euthanasia are supposed to be suffering from extreme, incurable pain and make repeated, informed requests to end their lives in writing. Doctors must provide patients with information about their prognosis and any benefits they might derive from alternative treatments, including palliative care. Physicians are required to keep detailed records and report all instances of euthanasia to a national commission that can cooperate with law enforcement if it appears to have been inappropriate (Cohen-Almagor 2009). But, the law’s implementation has allowed physicians to be primarily independent decision-makers about euthanasia without significant regulatory oversight. Some health care providers believe that Belgium’s euthanasia laws are an important way of addressing such a taboo subject. Others report significant abuse of the law. For instance, in approximately 3% of cases, drugs are administered without the patient’s explicit consent. The lack of consensus about how best to implement euthanasia laws contributes to many ethical concerns about the practice. Any moves to expand the law should only be undertaken after a critical examination of how the current system functions.

Question 4: Given increasing concerns about the way initial euthanasia laws have developed over the past 10 years, what additional safeguards will be in place to protect minors?

Belgium’s euthanasia laws were originally designed only for patients with no hope of recovery. However, several more controversial cases have come to light. Deaf twin brothers were euthanized last year after they found out that they were going blind. The brothers had no terminal medical conditions but reported that they could not imagine life without being able to see each other. The brothers had not yet actually lost their vision and made the decision to die pre-emptively (Ortiz 2013). In another case, a young woman fighting an ongoing battle with anorexia nervosa exercised her right to euthanasia because she no longer wanted to live with intense mental suffering. The woman was sexually abused by her psychiatrist; her next psychiatrist, who verified she was competent to choose euthanasia, was a good friend of the initial doctor who perpetrated the abuse (Cook 2013). Other contentious practices have also become commonplace, including organ harvesting after euthanasia and the extension of euthanasia rights to prisoners serving long-term sentences. With all of these questionable practices, there is considerable concern about vulnerable individuals. Current safeguards appear to be few and far between, and minors could be even more vulnerable than mentally distraught adults. If minors are allowed to make such grave decisions for themselves, bioethicists must ensure that additional safeguards beyond the usual regulatory requirements are in place to prevent unscrupulous, coercive practices.

The preceding questions are only four of the ones we should be asking when evaluating euthanasia policies as applied to minors. Please feel free to contribute more to the discussion. I hope that we can have a rich conversation with one another over the next few weeks!

Hannah Giunta is a fourth year DO-PhD student pursuing a PhD in Philosophy and Bioethics.

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2 Responses to Considerations for Minors and Euthanasia Laws

Many thanks to Ms. Giunta for initiating and inviting robust discussion on this topic. All four of her considerations are crucial ones, and her attention to implementation and to historical record
as well as to ethical theory is appreciated. Most importantly, Ms. Giunta warns us that in life-and-death situations, it would be particularly costly to make a fundamental ethical mistake with children: treating them as if they are just small adults.

Generally adults are the legal decisionmakers for children. The ethical ideal is often summarized as “parental consent, pediatric assent.” As minors age and mature, it becomes debateble when that should be reversed to an ethical ideal of “pediatric consent, parental assent.” That conceptual switchpoint is linked to a difference in ethical criteria for proxy decisionmaking. There are two standards of decisionmaking for proxy health-care decisionmakers: “substituted judgement” and “best interest.” Substituted judgment seeks to implement the choice that the patient-ward would if s/he were able to, the choice consonant with the patient’s values. Best interest seeks to implement the choice that third parties would agree to be in the patient’s best interest. Substituted judgment is most coherent for adult patients with known settled values. Best interest is more coherent when the patient is younger, or has unkown or unsettled values.

Ms. Giunta critically questions the viability and coherence of a substituted judgement standard for pediatric euthanasia, even for supposedly “mature” minors in their teenage years. The question I would raise for further discussion is whether a “best interest” standard for pediatric euthanasia could ever be met? What would be the dangers of either assuming so,or assuming not? What relevant case history exists for such judgments to date?…..

In answer to your question, I must admit that I am unsure we could ever develop a coherent “best interests” standard for pediatric euthanasia for both ethical and practical reasons. To my mind, the “best interests” standard is usually used to justify various interventions when parents are not making decisions consistent with their children’s health or welfare. It would require a radical re-engineering of current medical practice to incorporate euthanasia into a “best interests” standard. Continued life seems to be in the “best interests” of most children when pain and psychological suffering can be controlled. Discontinuing medical interventions seems to accord with these interests when treatments have become overly burdensome. It would be a stretch to say that direct killing could be justified in the same way within the current framework when there are other ways to dramatically reduce suffering in most cases. The answer may very well be to increase awareness about pediatric hospice services. Even if we could develop a standard, there would be a great need for regulation to prevent exploitation. The oversight required for pediatric euthanasia might make it virtually unsustainable. A great deal rides on our answers to these questions. For some, morality requires that we not perform euthanasia under any circumstances. For others, morality requires minimizing suffering in any way possible. I believe that Belgium is one of the first countries to even consider pediatric euthanasia, so it will be interesting to see how things develop in the coming years. Thank you for your excellent discussion!